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MP's reply to Dasatinib

Recieved a disappointing reply from my MP yesterday about the post code lottery with the prescribing Dasatinib.
His reply came with a letter from Dawn Primarolo from the Dept of Health. She basically outlined the position ragarding Dasatinib awaiting NICE appraisal. She also said what we already knew, that PCT's couldn't use the absence of NICE approval to deny prescribing any drug. It is, she said, down to the health professionals to decide on the use of any drug.
However, neither of them addressed the plight of those people who needed the drug now. So the MP has got another letter from me:

Hi David,
thanks for putting my letter about Dasatinib to the Minister of State. I recieved her/your reply yesterday. In the letter, Dawn explains the position regarding Dasatinib and the NHS's position. I already knew the position as I outlined it in my original letter to you. I am disappointed that neither Dawn or yourself have addressed why we have a post code lottery with this drug. At the time of my original letter to you, there were about three PCT's [I think] who were not prescribing the drug. Why is this so? I understand the point that Dawn raises when she says that it is up to the individual health professional to make the decision on prescriptions, but why is it only certain areas refusing to prescribe and why is this not being seen broadly across the country?

As for the current situation, well Dasatinib is wating for NICE appraisal. could you find out how long that is likely to take and if that timescale is not imminent, then could YOU put more pressure in the right places, please? Could you also find out how many PCT's don't prescribe the drug please? It's vital that the people in the areas not prescribing Dasatinib, are given access to it immediately.

Now it's not impossible that the scene has changed with these PCT's and that they are now prescribing Dasatinib, but my understanding is that it hasn't. If things have changed then great, problem solved.

Thanks
Dennis.

Dennis

Thanks for that.

I am planning another letter to my MP along the same lines but with another point too.

You will have seen under "Newswire" on the right for January 21st that Dasatinib has been approved for use in Wales by the All Wales Medicines Strategy Group.If you look at the AWMSG web site, you will find this statement: "NHS Wales should act upon the following recommendations endorsed by the Minister for Health and Social Services", then there follows the approval of Dasatinib for CML (ie chronic phase) and other drugs. It follows that the Minister of Health in London has approved Dasatinib for use in Wales but sits on his hands while NICE look at it for England. Dawn Primarolo must know that.

The AWMSG web page is at http://www.wales.nhs.uk/sites3/page.cfm?orgid=371&pid=24773

So our beloved Minister of Health and Parliament have between them created the ridiculous situation that Dasatinib is available in both Scotland and Wales (albeit with slightly different guidance), whilst in England we have to wait, possibly another year or more, while NICE cogitates, before we achieve parity. It seems to me to be bizarre that Parliament has created this unfair, unkind and cruel system within what is still called the National Health Service.

I feel angry about it on behalf of those who need Dasatinib and whose English NHS Trusts will not fund it. This situation needs sorting out. We all need to keep writing letters to MPs. Should we do more?

Regards

David

David,

It certainly is a ridiculous situation and very frustrating that Dawn made no comments at all in her letter to me, regarding those people who are denied access to dasatinib. That was the whole crux of my original letter.
She does refer to the Scottish funding for it though. I quote:

"Mr ******** mentions that Dasatinib has been approved for use in Scotland. I should explain that most NHS matters relating to the domestic populations of Wales, Scotland and Northern Ireland are devolved.

Guidance for the NHS in Scotland is developed by NHS quality improvement Scotland [technology appraisals] and the Scottish intercollegiate guidelines network. The Scottish medicines consortium conducts rapid appraisals of medicines as soon as possible after they are launched and, thus, assesses them before NICE. However, the consortium does not consult as widely, nor does it consider the same depth of evidence as NICE, resulting in a shorter timeframe.

Once finalised, the NICE guidance is issued to NHS Scotland by NHS quality improvement Scotland, which considers any specific implications for Scotland. If NICE were to come to a different conclusion to the Scottish medicines consortium about a medicine both have assessed, the NICE decision will normally take precedence since it will usually have been informed by more evidence on clinical effectiveness."

You might have known all this, but I didn't know how this shortcut worked. Why can't it be like that in England?
I've written back to my MP as I said, buit there's need for a concerted push from the appropriate support networks, to ensure fast tracking of new cancer drugs. First job though, is for the minister to instruct the PCT's that don't provide Dasatinib - now.

hello Dennis,

I have been told that the decision from the DH for a NICE referral has been taken and has gone through to NICE (see my post regarding this further down this page)
In the letter I have from the DH it stated that
"The length of time it takes NICE to carry out a standard appraisal of a treatment is around 62 weeks from the time of referral."
however we still do not know on which date the ministers took the decision so as I said in my previous post I will be writing again to the minister to ask for clarification of the following points:

a. What was the exact date the Sec. of State referred Dasatinib and Nilotinib for NICE appraisal?

b. Is the 'multiple technology appraisal programme' within the same timeframe as a "standard appraisal" i.e. of around 62 weeks from the date of referral?

c. If not then what is the timeframe that we can expect for a MTA?

I will also be contacting BMS Uk to ask if they can do anything further to help patients who need access to the drug now.
I am not sure they will be supportive of my suggestion to overcome the time lag problem but I can try.

I am trying to arrange to speak to my MP at her next available surgery to discuss how she may be able to help further.

Sandy

Quick question: is Dasatinib more expensive than Glivec?

i think you could argue that the costs are more or less the same for chronic stage CML. in any case there are so few people who are in the Glivec resistant group that it would make no difference to the overall costs of a PCT/NHS trust. CML is a very rare cancer (although more of us are living with it as a chronic disease so you could argue that the CML population will grow)
Sandy

Thanks Sandy, I thought the costs were similar, but wasn't sure about that. So on what basis is Dasatinib being refused? Is it simply that the health professionals aren't convinced of the medical benefits of Dasatinib?

hi Dennis, the people that are the problem in these cases are the PCT/trust managers who are all trying to save money anywhere they can.
i can only imagine that they think that funding 'expensive drugs' for a rare cancer like CML will open the floodgates if other drugs are developed for the more widespread cancers... like colorectal/lung/prostate and breast cancer.
the committees that make the funding decisions do not have clinical expertise so it is not the health professionals that are responsible, well not the expert clinician anyway. i imagine that they are as frustrated and as upset as the patients involved.
the way these drugs are assessed (if they do not have a NICE appraisal) is difficult to understand. there are around 3 problem areas as far as i know, but it is difficult to get a true picture due to patient confidentiality and the difficult position some clinicians are in regarding this issue, so we need patients themselves to contact us directly.
this is why we have to keep lobbying the DH through our local MP's and keep the pressure up. the more of us that do this the better.
but now that the DH have said they have approved both Dasatinib and Nilotinib for NICE appraisal the only questions we can push them for answers on is the timelines involved.
this is what i advise you to ask you MP to get and answer to.

I am going to write a letter to the ministers again and another to NICE asking for clarification on this. I will put copies on the site.
once we have a date then we can make some sort of educated guess at the timeline. we can then do other things with that information.
please email me privately if you wish to talk more about this.
sandy@cmlsupport.org.uk will get through to my email box.

Sandy ;o)

I note the comments about the discrepancies within the home countries of the UK - this is something we'll all have to learn to 'live with' as devolution really begins to hit, and have an impact upon various services which are now the responsibility of the devolved governments in Wales, Scotland, and Northern Ireland.

Although at present Dastanib is prescribable in Wales and Scotland, people will find other issues which are funded in England and not in either Wales or Scotland.
Believe me, as someone who works in the NHS in Wales, I am very much aware of how different the service is becoming across a wide spectrum in the four home countries.

As far as cost of Dastinib is concerned, the current BNF prices for this medication is:

20mg tablet pack 56 £1216.43

50mg tablet pack 56 £2432.85

70mg tablet pack 56 £2432.85

Thus, for someone on a dose of 70mg twice a day (BNF dose) the cost is a little over £88 per day.

(For Imatinib (Glivec) the cost of 400mg per day is a little over £53, to give a dose of 600mg costs a little over £79)

So comparative costs depends upon doses used.

The main issue with funding as I see it is not only the comparative costs of the new drugs compared with Glivec, but something already referred to - there are a large number of new therapies being produced by the Pharmaceutical Industry to treat other forms of cancer, and the NHS is having to face the challenge of giving an equal share to numbers of people suffering from those conditions.We obviously are then placed in the rather unhappy situation of having to compete with others for NHS funding.

I hope that those who are in need of the Dasatinib in England are successful in their fight.

Paul

hi Paul, thanks very much for you clarification and the breakdown of the costs of dasatinib compared to imatinib. it is very helpful to see those figures in print and as you say it really does depend on the dose needed (or tolerated) by the individual.
the issue of access is slightly more complicated.... access is only a problem if you live within certain regions of England. there are around 3 PCT's/NHS Trusts who take the view that as there is as yet no NICE appraisal of dasatinib (or nilotinib as it is still in trial) they can rightly deny access to this therapy. according to the DH,and i have this in writing, any negative funding decision taken by a PCT/Trust should not be based on cost.
the question is then, what do they base the decision on, given that the people involved in making such decisions are not clinicians and certainly not experts in CML?
we can only assume that the decisions are based -unofficially- on costs.
the other point... and probably the more important one... is that if an imatinib resistant patient lives in a city like Newcastle in the north east, they are unlikely to be able to access dasatinib. whereas if they lived in Leeds, they would have no problem.
we are talking about a very small number of patients who show signs of resistance to imatinib, so funding an alternative drug would not affect the overall budget of a STH or PCT etc.
according to a letter sent by Dawn Primorolo to my local MP, both dasatinib and nilotinib have now been approved by the Minister for referral to NICE for multi technology appraisal. this proces takes at least 62 days from the date of referral. i have just written again to the Ms Primorolo to ask for clarification of the date of referral so that we can assess when we can expect a decision from NICE.
meanwhile imatinib resistant patients in areas like the north east and other, but not all, parts of England run the risk of disease progression and worse.
in my view this is unacceptable and i will continue ask questions, not only of the DH but of the drug company involved. i have been very fortunate to have had access to therapy that has saved my life and because of that i can continue to be a fully active member of society, pay national insurance, tax etc etc.
best wishes,
Sandy ;o)

Hi Sandy,

Unfortunately, patients are getting caught between the politicians, NICE, and NHS management.
In addition, the whole issue of devolution is beginning to have an impact. I have heard debate here in Wales to the effect -how can the NHS be truly described as a NATIONAL service when there inequalities between services provided in the home countries? (England, Wales, Scotland, Northern Ireland)

I think that speaking to contacts at the drug companies concerned may be of some value, I know that the manufacturer of Dastanib (BMS) was involved in the deliberations of the All Wales Medicines Strategy Group (AWMSG). You can read the deliberations of that group on-line, which may help when communicating with the various bodies in England.

Best Wishes

Paul

Hi Paul, yes i do agree with you about the effects of devolution starting to be felt. i am hopeful that NICE will give a positive appraisal of both dasatinib and nilotinib, which will at least safeguard the imatinib resistant patients in the 'problem' pct areas. i am in touch will BMS UK and find them helpful but unable to do much in this situation. however, once we have a date from NICE (see my post above) for the proposed appraisal we can at least assess the timeframe we are looking at.
best wishes,
Sandy ;o)